This article is from the source 'nytimes' and was first published or seen on . It last changed over 40 days ago and won't be checked again for changes.
You can find the current article at its original source at https://www.nytimes.com/2017/07/13/world/europe/charlie-gard-uk.html
The article has changed 3 times. There is an RSS feed of changes available.
| Version 1 | Version 2 |
|---|---|
| U.K. Court Weighs Last-Ditch Plea by Parents of Terminally Ill Baby | U.K. Court Weighs Last-Ditch Plea by Parents of Terminally Ill Baby |
| (about 3 hours later) | |
| LONDON — They couldn’t agree on whether the baby feels pain. They couldn’t agree on how badly his brain has been damaged. They couldn’t even agree on the size of his head. | LONDON — They couldn’t agree on whether the baby feels pain. They couldn’t agree on how badly his brain has been damaged. They couldn’t even agree on the size of his head. |
| Lawyers for opposing sides in the case of Charlie Gard, a British infant with a rare genetic disease whose plight has attracted the notice of Pope Francis and President Trump, clashed repeatedly in a London courtroom on Thursday. | Lawyers for opposing sides in the case of Charlie Gard, a British infant with a rare genetic disease whose plight has attracted the notice of Pope Francis and President Trump, clashed repeatedly in a London courtroom on Thursday. |
| Charlie’s parents want to allow him to be treated with an experimental therapy pioneered by a neurologist in the United States. The London hospital that is treating Charlie and several courts have found that he is suffering, cannot be saved and should be allowed to die with dignity. | Charlie’s parents want to allow him to be treated with an experimental therapy pioneered by a neurologist in the United States. The London hospital that is treating Charlie and several courts have found that he is suffering, cannot be saved and should be allowed to die with dignity. |
| Charlie’s parents at one point stormed out of the courtroom, visibly frustrated at the resistance to their bid to keep their son alive. At various points, Connie Yates, his mother, who works with disabled children, shook her head defiantly while her husband, Chris Gard, who works in a company mail room, clasped Charlie’s toy monkey and stared plaintively at the ceiling. | Charlie’s parents at one point stormed out of the courtroom, visibly frustrated at the resistance to their bid to keep their son alive. At various points, Connie Yates, his mother, who works with disabled children, shook her head defiantly while her husband, Chris Gard, who works in a company mail room, clasped Charlie’s toy monkey and stared plaintively at the ceiling. |
| Justice Nicholas Francis of the High Court — who in April ruled that the hospital could take the baby off life support, and whose ruling has been repeatedly upheld — appeared frustrated at having to revisit the case. The hospital, Great Ormond Street Hospital, asked him to do so, although its position on the case had not changed. | |
| He expressed dismay that the two sides could not agree on the size of Charlie’s head — a crucial question, since, medical experts said, brain circumference can indicate damage to the brain. “It is absurd that the science of this case is being infected by the inability to measure a child’s skull,” he said. | He expressed dismay that the two sides could not agree on the size of Charlie’s head — a crucial question, since, medical experts said, brain circumference can indicate damage to the brain. “It is absurd that the science of this case is being infected by the inability to measure a child’s skull,” he said. |
| Later on, the judge highlighted a fundamental disagreement over whether Charlie is suffering — some medical experts say he probably is. | Later on, the judge highlighted a fundamental disagreement over whether Charlie is suffering — some medical experts say he probably is. |
| In the afternoon, the judge heard testimony via video link from a neurologist in the United States who has promoted an experimental therapy that he believes could help the boy, even though it has never been tried on anyone with the mutation that makes Charlie’s form of the disease — mitochondrial DNA depletion syndrome — particularly severe. | In the afternoon, the judge heard testimony via video link from a neurologist in the United States who has promoted an experimental therapy that he believes could help the boy, even though it has never been tried on anyone with the mutation that makes Charlie’s form of the disease — mitochondrial DNA depletion syndrome — particularly severe. |
| (The judge has barred journalists from identifying the neurologist, known only in court papers as Dr. I, but NewYork-Presbyterian Hospital/Columbia University Medical Center went on record last week to say that it was willing to admit Charlie as a patient or send an experimental drug to London, subject to Food and Drug Administration approval.) | (The judge has barred journalists from identifying the neurologist, known only in court papers as Dr. I, but NewYork-Presbyterian Hospital/Columbia University Medical Center went on record last week to say that it was willing to admit Charlie as a patient or send an experimental drug to London, subject to Food and Drug Administration approval.) |
| The neurologist said the treatment, known as nucleoside therapy, had been shown in mice to extend life span. He estimated the chance of clinical improvement of muscle function — defined as not having to constantly use a breathing machine — at 10 percent, but he acknowledged that the estimate derived from his work with patients with a mutation known as TK2, not the rarer mutation, RRM2B, that Charlie has. | The neurologist said the treatment, known as nucleoside therapy, had been shown in mice to extend life span. He estimated the chance of clinical improvement of muscle function — defined as not having to constantly use a breathing machine — at 10 percent, but he acknowledged that the estimate derived from his work with patients with a mutation known as TK2, not the rarer mutation, RRM2B, that Charlie has. |
| Defying the consensus of British doctors, the neurologist said he could not be certain how much structural brain damage the baby has. He admitted, however, that he had not seen the boy, or reviewed his full medical records or even the extensive legal record in the case. | Defying the consensus of British doctors, the neurologist said he could not be certain how much structural brain damage the baby has. He admitted, however, that he had not seen the boy, or reviewed his full medical records or even the extensive legal record in the case. |
| Pressed by Victoria Butler-Cole, a lawyer for the infant’s appointed guardian, the neurologist also acknowledged that the disease had no cure. He insisted, however, that the therapy had a small chance of improving the baby’s cognitive function — even though he told the court in April that the boy had suffered significant brain damage, and even though he acknowledged that the child’s condition had only worsened since then. (The neurologist said he may have “overstated” the damage.) | Pressed by Victoria Butler-Cole, a lawyer for the infant’s appointed guardian, the neurologist also acknowledged that the disease had no cure. He insisted, however, that the therapy had a small chance of improving the baby’s cognitive function — even though he told the court in April that the boy had suffered significant brain damage, and even though he acknowledged that the child’s condition had only worsened since then. (The neurologist said he may have “overstated” the damage.) |
| The issue has become a flash point on both sides of the Atlantic. A Washington-based anti-abortion group, Americans United for Life, said on Thursday that its president was “in London helping on the Charlie Gard case,” and that the boy “deserves a chance at life.” Some demonstrators protested outside the court. The judge warned that the hospital had received threats. | The issue has become a flash point on both sides of the Atlantic. A Washington-based anti-abortion group, Americans United for Life, said on Thursday that its president was “in London helping on the Charlie Gard case,” and that the boy “deserves a chance at life.” Some demonstrators protested outside the court. The judge warned that the hospital had received threats. |
| The parents’ lawyer, Grant Armstrong, insisted that the case “bristles with differences of medical opinion,” despite the consensus of the British doctors. | The parents’ lawyer, Grant Armstrong, insisted that the case “bristles with differences of medical opinion,” despite the consensus of the British doctors. |
| Experts have deplored the politicization of the case. | Experts have deplored the politicization of the case. |
| “Only the family, the doctors treating Charlie, and now the legal teams involved, know the details of complex issues that define his situation,” Neena Modi, president of the Royal College of Paediatrics and Child Health, wrote in an open letter on Monday. | “Only the family, the doctors treating Charlie, and now the legal teams involved, know the details of complex issues that define his situation,” Neena Modi, president of the Royal College of Paediatrics and Child Health, wrote in an open letter on Monday. |
| Dr. Modi said that in Britain, the decision to withdraw life support was predicated on three factors: if treatment was “unable or unlikely to result in the child living much longer,” if treatment may prolong life but would cause unacceptable pain and suffering, or if an older child with a life-limiting illness has clearly declined treatment. | Dr. Modi said that in Britain, the decision to withdraw life support was predicated on three factors: if treatment was “unable or unlikely to result in the child living much longer,” if treatment may prolong life but would cause unacceptable pain and suffering, or if an older child with a life-limiting illness has clearly declined treatment. |
| In Britain, disputes like Charlie’s rarely end up in court, but when they do, it is the courts — not the parents — that have the final say in determining a child’s best interests. | In Britain, disputes like Charlie’s rarely end up in court, but when they do, it is the courts — not the parents — that have the final say in determining a child’s best interests. |
| Justice Francis asked doctors to confer on Friday, and he said he hoped to issue a decision early next week. | Justice Francis asked doctors to confer on Friday, and he said he hoped to issue a decision early next week. |
| “Time is not on our side,” he said. | “Time is not on our side,” he said. |